Category: Fibromyalgia

Fibromyalgia

Spoon Theory……..

louiseissy

One of the most debilitating symptoms I experience on a daily basis is fatigue. It’s difficult for anyone who hasn’t experienced this type of fatigue to understand what it feels like. It isn’t like the feeling of just needing more sleep; it’s complete physical and mental exhaustion. The only other time in my life that I have experienced this type of fatigue was after giving birth following a 21 hour labour. There are times when I feel like I am walking through treacle and struggle to support my own head; making decisions become impossible. I do my best not to get in this state by pacing my activity as best I can.

Christine Miserandino has lupus and experiences chronic fatigue. She came up with a brilliant analogy called Spoon Theory to enable her friend to understand what her life with fatigue was like. Christine used a set of 12 spoons to represent the amount of energy she had to ‘spend’ on daily activities. She then assigned her daily activities a number of spoons e.g. getting dressed – 1 spoon, taking a shower -2 spoons and so on. Christine then explained that if she ran out of spoons she could either not do anything else that day or occasionally she could ‘borrow’ spoons from the next day. Either way the average of 12 spoons a day remained the same. During bad periods this average could be lower.

Currently I am in a bad period and running on 8 spoons. My spoon expenditure is as follows:

  • Getting up and dressed 1 spoon
  • Getting up, dressed and showered 3 spoons
  • Making breakfast/lunch 1 spoon
  • Taking care of the cats. 2 spoons
  • Going on a short 15 minute walk 3 spoons
  • Doing physiotherapy 3 spoons
  • Practising the piano 2 spoons
  • Looking after family. 4 spoons
  • Making phone calls/appointments 1 spoon
  • Going to local shop 2 spoons
  • Going out and being social. 4 spoons

Ideally I’d like to be able to do my walk, physiotherapy and piano practice everyday but at the moment that would be all I’d be able to do before crashing. I constantly have to make trade offs e.g on days I shower I don’t do my walk and I make sure I don’t have family duties. I don’t like letting people down so I always drop the activities that only I benefit from e.g. my piano practice and physiotherapy first before anything else. I struggle with being a burden on others and try to do my best to minimise this. There are times when I have to hold my hands up and say I can’t do anything right now because I’ve reached the stage I described at the beginning of this post.

Ironically one way to increase my spoon allowance quickly is to incorporate more exercise into my day. If I were to do my walk and physiotherapy every day without fail I would probably be running at 10-12 spoons at the end of the third or fourth week. In order to do this I’d have to be utterly selfish and not do anything else at all. Instead I am doing the best I can and hoping this bad period will be over soon.

I don’t mean to sound self pitying in this post. I’ve lived with this condition for 15 years now and it’s just the way my life is. I have lots to be thankful for not least a loving and supportive family and most of the time I am happy with my lot.

Click to access BYDLS-TheSpoonTheory.pdf

Depression, Fibromyalgia

Behavioural Activation……..

louiseissy

I suppose most people procrastinate at sometime in their lives especially when needing to fulfil onerous tasks. At school I was always leaving my homework to the last minute unless it was a subject I enjoyed

Since becoming ill with depression and fibromyalgia my procrastination has reached epic levels. Being so tall I have difficulty buying coats with long enough sleeves so I thought I’d have a go at making myself a full length winter coat. I chose a pattern and ordered the required materials back in March. It is now October and I still haven’t made a start. I keep making plans to start on a certain day and end up dithering and making excuses. It is the same with my reborning (making hand painted realistic dolls); I started my current doll back in August and haven’t worked on it since my surgery.

I sometimes think I’m like this because of my perfectionism i.e. while I’m not doing the activity I’m not making any mistakes. I always feel better about myself when I’m being productive and I wish I could motivate myself more.

Behavioural activation is a branch cognitive behavioural therapy (CBT) that aims to help people engage more often in enjoyable activities and develop or enhance problem-solving skills. One of the symptoms of depression and chronic pain is a loss of interest in activities that were previously enjoyed. These activities are seen as not being worth the effort and this creates the vicious cycle seen below:

DvckCJVXgAAuWbd

Behavioural activation involves looking at any obstacles to participation in activities and making strategies to overcome them. This may involve breaking the activity down into smaller, more manageable steps. It is often helpful to keep a record of thoughts and feelings while doing activities. This can be used to identify what worked and what didn’t with the goal of finding a positive solution to problems encountered. The ultimate aim of behavioural activation is to shift the person from the cycle shown on the left of the diagram to the cycle on the right thus releasing them from the inaction that made their depression worse.

There is a course on behavioural activation that I can attend locally so I think I’ll go and enrol now.

Fibromyalgia

The end of ‘rehab’ and looking forward…….

louiseissy

Today is day eight of my opiate withdrawal and I am proud to announce that I have made it. Many of the horrendous symptoms have now abated and I am feeling clearer headed already. I am however left with some nausea and insomnia -sleeping four hours at night. One of the more weird effects is my mood. I didn’t realise that opiate painkillers act on the brain in the same way as the neurotransmitter dopamine. Long term use of opiates causes the brain to make less dopamine as they are so much stronger. This means that at the moment the dopamine levels in my brain are below normal and this has resulted in my mood being very flat. I’m neither happy or sad, I just don’t feel anything. It’s worse first thing in the morning and I seem to feel a bit better as the day goes on. Fortunately my levels of dopamine should return to normal within about four months. For the first time I can definitely say and name what is wrong with my faulty brain!

Anyway on to the future. Now that I feel I have taken charge of my body I am feeling really optimistic even though my pain levels are quite high. Having a logistical, scientific mind is probably a hindrance to me here. I know a lot of people find that holistic therapies are of benefit in the treatment of chronic pain. I have tried acupuncture before but didn’t find it helpful . I do however find the relaxation part of yoga works well, especially after the workout. Some of the yoga chants seem a bit weird to me but they do focus the mind and the resonation in the chest feels good.

I am going to get a monthly pass to the local health spa so I can use their pool and jacuzzi as many times as I want. I wish we had room for a hot tub at home as I know it would be a great help to me. I remember the comedian, Jasper Carrott saying that all you needed at home was hot bath and a curry!

If I ever get well enough to work again I think I’d like to work as a teaching assistant. All the joys of working with the children without the red tape of being a teacher. With my musical ability I think I could really help to bring joy to a school. When I was at primary school we had a headteacher who was really musical and the concerts we put on were amazing. I’ve never seen anything like it since in any primary school. I must brush up on my guitar skills.

Fibromyalgia

Going cold turkey……..

louiseissy

Having made the decision to come off my opiate painkillers I did some research of clinical studies about how best to achieve my aim. The less traumatic route of gradually titrating my doses down over a period of a couple of months was an option but having to cope with further intestinal issues and bouts of vomiting for another eight weeks wasn’t appealing. Going ‘cold turkey’ as they say wasn’t very appealing either but it meant that I could be free in a mere eight days.

The two opiates that I had to stop were sustained release tramadol and high dose short acting codeine. My final dose of tramadol was taken on the morning of March 23rd and my final dose of codeine was taken at 10:30pm on March 24th. Below is a diagram showing the timescale of opiate withdrawal.

opiate-withdrawal-timeline

I had intended to record my thoughts and feelings over the days of the withdrawal process but the first two days were so difficult I couldn’t even begin to describe how I felt. It is only now on day four that I have regained my ability to think.

I have passed the peak of the withdrawal process and I am on the path to normality albeit with a huge increase in my fibromyalgia pain which was to be expected. I haven’t been able to do my daily walk as I’ve needed to remain close to the loo all week but I have been doing some yoga stretches to try to alleviate some of the pain. I’ve also been trying relaxation while listening to music and that has helped a bit too.

I now feel like I’ve stopped being a ‘sick person’ and I’m finally taking charge of my condition. I am hoping to rehabilitate my muscles with gentle exercise. I don’t think I will ever be pain free but if I can improve my muscle function it will be of benefit to me.

I wouldn’t recommend anyone reading this post to stop taking any prescribed medication without first consulting a medical professional. I saw a gastrointestinal consultant who recommended coming off my painkillers before I did this. I also consulted a pharmacist this week when things got really tough. This course of action was the right one for me and I certainly do not judge any fibromyalgia sufferer that requires strong painkillers to manage their symptoms. I just couldn’t deal with the bowel dysfunction anymore.

Needless to say I have now have tremendous sympathy for all drug addicts. What I’ve been through this week must pale into insignificance to what they must have to go through to get clean.

Fibromyalgia

The Reckoning……..

louiseissy

Although this is going to be a slightly embarrassing post I’m going to share what’s happened to me in the hopes that it may help others to not reach the extreme situation that I’m finding myself in.

When I was diagnosed with fibromyalgia back in 2007 I was put on a cocktail of painkillers. Most of them were opioid based. As well as producing dependency they have the side effect of causing severe constipation. I have been managing this with various over the counter medications and in the past six months prescription strength osmotic laxatives.

It seems the bouts of vomiting I’ve been having all year have been the result of severe constipation and not gastroenteritis. I had an attack yesterday afternoon which I was able to stop with an anti-emetic. Coincidentally I saw my gastric banding consultant yesterday and was shown my CT scan from just before Christmas. The band hasn’t been doing its job for years because it has slipped out of position but what was alarming for me was the shape of my colon. It has become so distended I’m surprised I haven’t had more symptoms.

Enough is enough, with my family history I have to do something as chronic constipation can increase the risk of colorectal cancer. It is now obvious to me that I have to come off all of my opioid painkillers and manage my pain through other means. My consultant said that I can be referred to a pain psychologist for help with this.

I have come off sustained release oxycodone before and I managed the symptoms of withdrawal quite well but I haven’t been free of all painkillers in over a decade and I’m terrified about how bad it’s going to be. Other people see me as a strong person but I’m not. I’ve no idea if I can do this but I have to try.

Depression, Fibromyalgia

A Quick Update……..

louiseissy

I’m feeling very defeated at the moment. I had yet another bout gastroenteritis which was so severe that David called an ambulance for me because I had gone into withdrawal from my pain medication. I’m now recovered but feeling very, very tired. I’ve tried to reduce my pain medication but couldn’t tolerate the increase in my pain levels. I’ve also had a relapse in my depression and anxiety after being stable for over a year. My doctor has increased my antidepressant dose so hopefully I will be feeling better in a couple of weeks.

On the positive side before I was ill, I did manage to finally go to a yoga class. The first surprise was that the class was held in semi darkness. For me this was great because it meant that I felt less self conscious. I was also able to do the whole class without having to rest. The form of yoga that was taught was hatha yoga. Hatha yoga involves moving into poses and holding them while concentrating on breathing. My flexibility is very much reduced due to the fibromyalgia and some of the poses were difficult for me but for my first class I think I did ok. I can really see how yoga is going to help rehabilitate my muscles so maybe in the future when my muscles are stronger I can try again to reduce my pain medication.

Depression, Fibromyalgia

Killing Time……..

louiseissy

The month of January wasn’t finished with throwing its curved balls at me. I had a further bout of gastroenteritis to get through but I recovered quite quickly. I am now in a flare up of my fibromyalgia and chronic fatigue. It is so frustrating as my brain is active. I want so much to be productive and achieve something with my time. There is nothing so soul destroying as sitting on the couch watching daytime television and endless YouTube videos.

Losing my Dad to cancer in June 2017 has made me acutely aware of my own mortality. I will be 46 in a weeks time and I have always assumed that I will make it well into my eighties. My Dad was 71 when he died and I’ve realised that there are no guarantees in this life.

I want to make the most of every day. I know it’s impossible to do something extraordinary every single day but I at least want to do something of use. I always make sure that I treat people with respect and kindness and I will always help anyone who needs it. Doing something for myself? That’s where the problems lie.

When I’m tired, low and in pain I tend go into myself and sit and stare; this may be due, in part to my medication. I literally feel that I’m just ‘killing’ time. At times I can force myself to do something but within 5-10 minutes my concentration wanes and I end up putting it away. Perhaps I am being too hard on myself again. I feel that I’ve lost 10 years of my life to this illness and I don’t want to waste any more. I have so much I want to do and I’m just not doing any of it.

I’m sorry that this is such a miserable post. I will try to do better next time.

Fibromyalgia, Weight

Recovering from illness……..

louiseissy

I haven’t been able to post for a while because of illness. Due to being on strong painkillers I missed the symptoms of cystitis and ended up with a nasty kidney infection again. The antibiotics I was given caused some serious gastrointestinal problems. Long story short I was pretty sick. The infection has now been cleared with a different antibiotic and I am recovering.

What I am left with is extreme fatigue, smell sensitivity and a total dislike of any food I ate previously. I know it’s normal to go off the food you ate before being sick but this is more extreme. I like to eat the same thing for breakfast and lunch everyday, it just makes my life easier if I don’t have to think about my meals. I was really worried that I’d end up only being able to eat food that didn’t fit into the Slimming World plan and maybe gaining weight. Fortunately I remembered that Blue Diamond Almond Breeze milk is only 6 syns for a litre so I have been making rice pudding with it. I know it’s a bit weird having rice pudding for lunch but it is really working for me. Today I got my 5 stone award and my total weight loss from my heaviest weight (which is 2 stone heavier than when I started Slimming World) is now 102lbs. I haven’t been this light since my early twenties.

As far as exercise is concerned it’s a bit slow. I had to take a week and half off from doing my walk while I was ill and I only started again yesterday. My pace is very much reduced but I am sure I will be back to where I was fairly quickly. Yoga is still booked but again has been delayed. David and I are planning to go to our first class next Monday evening. I have high hopes for yoga in that some of the techniques will enable me to reduce my pain medication.

It’s been a frustrating time. I had all these plans for January which had to be put on hold for while. My 2019 begins here!

Depression, Fibromyalgia

Post Christmas Slump……..

louiseissy

For as long as I can remember I have always found the period from New Year to my birthday mid February difficult. I used to put in down to seasonal affective disorder with the lack of daylight being the cause. If this were true however, the effects should have started before January when the shorter daylight hours began. I think the fact that there are a number of family birthdays and Christmas to prepare for in November and December help to keep me focussed. There were things that had to done within a set period of time.

Now I am faced with having to motivate myself to do things without the pressure of time which I have always found difficult. At school I was the pupil that left their homework to the night before it was due especially if it was for a subject I didn’t like. My situation is also complicated by the fact that my CFS isn’t great at the moment. I am feeling tired a lot of time so my brain is on a go slow and everything feels like such a monumental effort.

I’m doing all I can to keep the house ticking over thereby removing any additional stress from David who is also finding things difficult at the moment. It is the first time in years that I feel that I am pulling my weight in our partnership and I don’t want to go back to being totally dependent again. It is for this reason that I am doing my utmost to keep my eating and exercise regimes going, even though it’s extra hard at the moment. I have my one-to-one yoga session on Wednesday morning which I am actually looking forward to.

I have decided to delay my medication changes until after my birthday as I don’t see the point of making an already difficult time worse. The fact that I have felt able to do this is huge, usually when I decide to do something and plan a date I stick to it regardless of whether it is advisable or not. My Slimming World consultant, Paula said on Friday that I have learned to be kinder to myself and I think this is the reason why I have been able to make progress long term.

Fibromyalgia, Weight

A general update……..

louiseissy

In my post of November 3rd I wrote about the final barrier I had to overcome in my fight against fibromyalgia i.e. stretching my tight muscles. True to form I have been procrastinating due to the fear of pain. I decided that I really had to do something to prevent me from putting it off any longer. A lot of fibromyalgia self help books recommend yoga. I did a bit of research into local groups and found a qualified instructor who offered an initial one-to-one session and lessons for a month for only £65. This means that I can try it out without having to worry about interacting socially with lots of new people all at once.

The instructor is called Ben Parkes and he has his own company ‘imaginatively’ called YogaBen. He was encouraging in his emails and I’m actually looking forward to getting started. Besides the muscle workout some of the class is spent on relaxation and mindfulness which in the past have proved very difficult for me. I am willing to give it 100% in the hopes that it will improve my overall health albeit in the long term.

In the past I have been known to get obsessed with new hobbies so I have made myself a rule that if I take to yoga I won’t do any more than two sessions a week.

Today at Slimming World I reached the milestone of dropping below the lowest weight I reached in 2014. I am now the lightest I’ve been for 23 years and I’m only 3lbs away from losing 100lbs in total. I don’t think my brain has caught up with my change in size as when I move around I feel like parts of me are missing. It’s a really odd feeling. I’m almost annoyed that it’s Christmas next week as it’s going to slow down my weight loss next week. I know I could stick to my eating regime 100% over the Christmas period if I really wanted to but it would only make me feel resentful of other people that can let themselves go. I’m not going to go mad though, I’ve decided to allow myself a portion of any dessert I want on Christmas day and that’s it. For anyone reading this, I must sound like a crazy woman but I’ve learned over the years that I cope better when I plan in advance.